Saturday
Dec 16th 2006PeterMore treatment!
Well, I didn’t have to wait until next Thursday for the results, as yesterday afternoon (just before six, I was most impressed, having bunked off for the weekend about 3 hours earlier) I had a call from Rob, the SPR, to say that they had had the preliminary results through from the PET team.
You might think that this would be bad news, and you would be right – and wrong!
First the good news. There was no sign of the lymphoma in my neck where I had the radiotherapy, so it is definitely radio-sensitive, however the bad news is that the nodes in my chest and abdomen are larger, and really confirming what we suspected, that the disease is more aggressive and is advancing quicker than the Graft v Lymphoma effect can hit it. These are difficult areas to treat with radiotherapy as the risk of damage to other organs is much higher, especially as I have had total body irradiation in the past. There also appears to be some fluid on my lung and in my abdomen. As it happens I have had a chesty cough for a couple of weeks, which I had put down to a bug, but if the lymph system isn’t draining my lungs as efficiently as it might, then that would explain it – and also the breathlessness I have been suffering from.
However – we have a plan! It involves chemotherapy, and is intended to get the lymphoma back under control before we continue with the donor lymphocytes. I have had a fair bit of chemo in the past, but more aggressive lymphomas and leukaemias are more susceptible to chemo (because the cells are dividing quicker). The problem is that we know we have also bred in resistance to some drugs. Anyway, the regime I am having is called R-CHOP, Rituximab, Vincristine, Doxorubicin,Cyclophosphamide and Prednisolone. I have had some of these before (but I don’t think Vincristine or Doxorubicin although I may have had some of the same family) but not in this combination. The other bit of good news is that in my extensive drug collection, I did find some prednisolone, so I was able to start that this morning.
So on Monday I am off to Guy’s to have blood and other tests, (mainly kidney function) and then all being well, I will have the rest of the regime all day Tuesday. It will be a long day! There is a risk of adverse side effects with Rituximab, although I have had it twice before without any problems, but then I do have a new immune system now. That will be given first. Then back home for Christmas, with, I hope, the lymphoma reeling a bit! It looks as if I will lose my hair – again! Oh well, it will grow back!
I don’t know if I will have more courses before we restart the DLI. I guess that depends on the result, but it will be a safe bet that I will be seeing my friends in the PET centre again! Talking of which, I will say that while the Oromorph only helped a little with pain control during the PET scan, I did have a remarkably good sleep that night!
Finally, and much to my surprise, I discovered that there is a link from a blog in “The New Statesman” to this blog (and John’s ‘Disabled Rants’). The link to The New Statesman page is here and also included in the sidebar. If you click on the link, I am in the blogroll. I shall watch watch my future web stats with interest!
O&U!
6 Responses to “Saturday”
Richard on 17 Dec 2006 at 12:01 am #
A ‘cunning plan’……….I am feeling a crossing coming on again.
I know! A distraction is called for. Christmas shopping, Peter after what you are going through Christmas shopping must be like heaven.
Xixhaxd
Peter on 17 Dec 2006 at 8:39 am #
Most of it done on-line! Ah – the modern world!
John on 17 Dec 2006 at 11:57 am #
Hey i guess it is Welcome Back to Slaphead Gang again then Peter, just try and find a nice wollen tea cosy or then again you never know what santa will bring??
That seems a rather interesting combination of drugs they intend throwing down you. I have had a few of them. Vincristine if i remember right is a sure fire case of make sure you take plenty of roughage as it is the worlds worst blocker upper if you get my meaning?? i’ve had Daunorubicin if thats the same as Doxorubicin? I seem to remember that it made me feel quite woozy and distant. Also you get this sort of head to toe toxic feeling not too pleasant. Hopefully though they will all have the desired effect.
I seem to have noticed a few more hits on the blog recently too thanks to the New Statesman link. Hey they will all be after us soon to try and make us millions, selling stories of our experiences. Ah Yes i feel a nice Cruise coming on maybe followed by a new mansion……….
See Ya!!
Peter on 17 Dec 2006 at 12:19 pm #
Ah, such joys to look forward too! Try Thalidomide as a blocker upperer! Any idea when the “New Statesman” link appeared? I only noyiced because there was a referral indication. Cruise sounds a good – plan, but I won’t be holding my breath waiting for the cheque!
Robert Kelso on 18 Dec 2006 at 4:19 pm #
Peter,
Just to say that I jumped to your blog from Elspeth’s because the text is not displaying in the unshaded area perhaps this is my machines problem but thought you would like to know.
Like the festive colours
Robert
John on 19 Dec 2006 at 3:06 am #
Ah yes Thalidomide. That is going to be Merlins next Potion of choice if this whole Photo whatsit thing a me jig doesn’t work. Isn’t life fun hey???.
I’m not too sure about the New Statesman link, as to be honest i only noticed it when you pointed it out. it looks like it might have been around november when it started.
i recon it the Cruise will probably end up being a day trip on the Paddle Ship Waverley or Balmoral that sail round these parts in the summer months. Equaly as much fun though, just not the pampering!!
Right back to wheezing and splutering and generally strugling for breath.
See Ya!!